Mum wants Taoiseach to do 'pie challenge' for baby Luke born with a rare brain disorder

Laura Larkin
– 17 June 2015 12:21 PM

Clondalkin mum Emma Styles (22) with baby Luke

A CLONDALKIN family were left reeling when they discovered that their eight-month-old baby became the first person in Ireland to be diagnosed with a rare brain disorder.

Mum Emma Styles (22) and her partner Michael Crossan were devastated to learn that their son has AADC (Aromatic Amino Acid Decarboxylase Deficiency).

AADC is a brain condition that affects the body’s ability to produce dopamine, serotonin and neurotransmitters.

After a series of tests prompted by the concern of Luke’s public health nurse, who felt like he wasn’t meeting his milestones, doctors at Our Lady’s Children’s Hospital discovered that the youngster was likely to be suffering from the disorder.

“The whole journey has been devastating since it started but it was a type of relief to get a diagnosis after months of frustration,” brave mum Emma told the Herald.

“It’s not a guessing game anymore.”

The family have connected with other parents of children around the world who are affected by the disorder through the AADC Research Trust.

“It was a great help to find out that we weren’t the only people going through this,” she explained.

Luke is developing at a slower pace than other children and has some difficulty with his muscle tone, meaning he finds it hard to hold his head up for long.

Emma and Michael, who also have a two-year-old son, MJ, are determined to raise awareness about their son’s condition and hope to raise funds for further research.

“We sat down and tried to come up with something that would appeal to everyone because it is a condition that affects such a small number of people and not

many people are fundraising for it,” the concerned mum explained.

The family have started an online campaign called the Cream Pie Challenge for Luke.

It is as simple as it sounds. People are being asked to spray whipped cream onto a paper plate and ‘pie’ themselves in the face.

Those who take up the

challenge are then asked to donate on the family’s online fundraising page.

Emma and Michael have also thrown down the gauntlet for some very well-known faces to get involved.